15-Year Myeloma Survivor Speaks: Tackling Cancer Head-On

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Topics include: Living Well and Patient Stories

Terry Barter has been living with multiple myeloma for more than 15 years. When he was diagnosed, there were no treatments available. Terry and his wife, Diane, tackled his cancer diagnosis head-on and took control of Terry’s care. If Terry did nothing, he probably had two years to live. The idea of a transplant did not sound good to him as he learned about new drug that was about to begin a clinical trial, the drug lenalidomide (Revlimid), Terry was the first person in the trial for this drug. Listen as Terry and Diane speak about their own experience with multiple myeloma and their insights for other patients. Today he is just taking one pill a day and is living a good life, including a total of 11 grandchildren and another on the way. 

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Okay.  Here we go.  Hello and welcome to Patient Power.  I'm Andrew Schorr.  Well, thank God, there are a number of cancers now that can be considered chronic illnesses.  People can live a very long time.  I've been living with leukemia now 21 years.  I want you to meet someone with multiple myeloma now, about 16 years, and that's Terry Barter.  He joins us with his wife, Diane, from Berlin, Massachusetts.  Diane and Terry, thanks for being with us on Patient Power. 

Terry Barter:

You're welcome.

Diane Barter:

Thank you for having us. 

Andrew Schorr:

Okay.  So, Terry, we got to start with how did this diagnosis way back in 2001 happen? What led you to even want to go to the doctor in the first place? 

Terry Barter:

Well, I was very excited.  I was on a trip on my motorcycle up in Nova Scotia, and I had to just keep pulling over and going to sleep.  I couldn't stay awake.  And when I got home I went to the doctor, and they tested me for all kinds of stuff, Lyme's disease, everything, and it turned out that it was multiple myeloma. 

Andrew Schorr:

So, Diane, were you on that motorcycle trip? 

Diane Barter:

Oh, yes.  We were, I was.  Yes. 

Andrew Schorr:

So when your husband was having to pull over, it's got to be pretty terrifying, but then you found out it's a cancer.  How did you cope with that experience?  You have a whole bunch of children. 

Diane Barter:

Right. 

Andrew Schorr:

Now you have almost 12 grandchildren, but now going back when you had kids, of course, how did you cope with all this? 

Diane Barter:

It was pretty hard to hear it.  It brought back—a little background history, one of our sons had cancer, so it brought that back to me.  Um, I had a hard time dealing with that.  He did fine, great now, but he had what what's called retinoblastoma, cancer of the eyes.  So it was very scary for me when that happened to him. 

And then to have this diagnosis of cancer for my husband I—I didn't know what to do.  I had young kids.  They were young at that time, you know, couple in early high school and one in grade school.  So that was hard.  What am I going to do? 

Andrew Schorr:

Understood.  So, Terry, there you are.  You get told you have multiple myeloma.  Had you ever heard of it? 

Terry Barter:

No.  As a matter of fact, I said, well, it can't be happening.  I never heard of it, you know.  But come to find out, the doctor said, well, there's just no cure for it. 

Andrew Schorr:

Right.  Right.  And also you were fortunate there in Massachusetts that you ended up seeing Dr. Kenny Anderson, one of the foremost myeloma specialists in the world with the Dana-Farber Cancer Institute.  So then you start saying, all right, what are we going to do about it? Now, many people have all sorts of infused therapies, chemotherapy, one transplant, maybe two.  You were hesitant about all of that, weren't you? 

Terry Barter:

I was.  As a matter of fact, Ken Anderson was my third opinion.  I had been to two other doctors, and they both wanted to do transplants right away, bone marrow. And when I went and saw Ken, he said, well, let's try a couple of things.  And when he got my numbers down he said, I think it's time to do a transplant.  I said, I came to you because I don't want one.  I said just make me as comfortable as you can for as long as you can, and I'll be happy. 

Andrew Schorr:

Wow.  Now, of course, you run a business.  I know you employ a lot of people, and if someone has a transplant—I've thought about this just with Patient Power—you're out of commission for a while and wanted that.  Was that part of your thinking, that you just wanted to keep working, running the business?  You had a responsibility to the family, and that was what you were thinking? 

Terry Barter:

That's part of it.  The biggest thing is that I've never missed any work from this cancer.  I, you know, I still go to work every day.  As a matter of fact, I was late getting here today because of going back to work.  That's a big part of my life, supporting my family through my job. 

Andrew Schorr:

Right.  Well, let's talk about what therapy you got on.  So you ended up in a Phase II clinical trial for a drug we know well in the myeloma community now, lenalidomide (Revlimid), but you were one of the very, very early patients.  How has it worked out for you, because I believe now, so many years later, you're still taking it? 

Terry Barter:

I still am taking it.  And there's been a lot of other drugs that have come out, and Revlimid has newer versions that are more tolerable to people, but as long as Revlimid is working for me I'm not changing it.  It's where I want to be. 

Andrew Schorr:

Right. 

Terry Barter:

I can tolerate it, and I'm living a good life. 

Andrew Schorr:

So oral therapy—so you never really had injections and this and that, any of that.  You just take a pill. 

Terry Barter:

That's it. 

Andrew Schorr:

Okay.  And then you've been working the whole time. 

Terry Barter:

I am and a lot of hours.  I've started to cut back my hours now.  I do, I work a lot, and I enjoy it, and I enjoy doing it. 

Andrew Schorr:

Yeah, but you're 69, man.  You deserve a little break, you know. 

Terry Barter:

That's right. 

Andrew Schorr:

So, Diane, you've watched over these 20 years where a medicine from its roots, some of its earliest clinical trials.  It's worked for your husband.  What has that meant for you? 

Diane Barter:

Well, it's pretty amazing, because the diagnosis was pretty bleak way back when they told us there weren't treatments like there are nowadays.  There was a transplant, and that was done, and there was nothing else you could do.  So it was pretty scary for me and just watching. 

And when we first met Dr. Anderson, he just made us both feel so calm, and he was going to make, you know, do the best he could to make Terry healthy.  And just to watch the way he was, how compassionate he was, just put us at ease.  So he was a great help in helping me get through, and then support groups were very helpful for me, just finding other people in my situation. 

Andrew Schorr:

So is this kind of incredible that your husband can take a pill, and it can keep the cancer at bay? 

Diane Barter:

Yeah.  I mean, I was thinking cancer, okay, you know, surgery, or you know, chemo drugs, like IV drugs and things like that.  I was not thinking pills, so it was pretty amazing. 

Andrew Schorr:

So, Terry, you have the perspective of now since 2001, a long time, living with cancer.  There are people who will watch this, bosses as well, family members, and they get a diagnosis of multiple myeloma.  They're pretty terrified.  But yet you've benefited from modern medicine, and what would you say to them? 

Terry Barter:

I'd say that if they get diagnosed with multiple myeloma, it's kind of fortunate that that's the cancer they have, because they have come out with so many new drugs, seven new drugs last year.  They're very close to a cure.  It's a cancer that you can live with, you know, and I've been fortunate what I've been taking has worked. 

Andrew Schorr:

Right.  Now, you have now—you're about to have your 12th grandchild.  So what's your hope for the future, Terry?  With all the kids you have.  You have sort of a blended family.  You have a lot of kids and a lot of grandchildren.  What's your hope? 

Terry Barter:

My hope is that I can see some of their children. 

Andrew Schorr:

Yeah, well, I hope you have—that you can see great grandchildren? 

Terry Barter:

That's right.  That's what I'm saying. 

Diane Barter:

Yeah, we have two young sons to get married, so we have that too. 

Andrew Schorr:

Right.  Right.  And, Diane, what would you say to family members who worry?  I mean, think back.  There you were in that motorcycle trip, Terry had to pull over, and then you found out it's cancer.  Those kind of symptoms or others will come up for somebody affected by myeloma, and the spouse is going to be terrified.  What would you say to people today?  Would you echo the kind of thing that Terry was saying? 

Diane Barter:

Yeah.  I mean, I would say no problem getting a second and third opinion, because that was important to us.  And reach out to people.  It's hard to ask for help, but with having young children like we had, I was worried about my husband.  I was worried about my kids.  I couldn't do everything, so I found out from my children, which I try to tell other people, is they need somebody else that they feel comfortable with. And my older sons definitely had teachers that they felt like they could go to when they had—you know, their father had cancer.  That was scary to them, you know.  So I think getting help and support groups are very important. 

Andrew Schorr:

Right.  Well, thank you for what you've done over the years.  I'm sure you've been speaking now to many people. 

One last thing for you, Terry, and that is you were in a clinical trial, a Phase II clinical trial, that's an earlier trial.  What would you say to people about considering being in a clinical trial and maybe the chance of tomorrow's medicine today, which is what happened to you? 

Terry Barter:

Right.  I would say you have to find our own comfort zone.  For me the comfort zone was to go that route.  I could never tell them what they should do, but for me it was the right decision, and they really need to look at it because sometimes these drugs are just fabulous.  They work, and they take care of it. 

Andrew Schorr:

Well, I'm so glad it has for you now for 16 years or so, and may you have those great grandchildren, the two of you, and just hug each other.  Do you still go on the motorcycle, Terry? 

Terry Barter:

Well, I—actually, I went out and I bought myself a new Corvette convertible.  It's much nicer.  When it rains you just put the top up.  So I have a motorcycle, but I don't ride it as much. 

Diane Barter:

It's fun. 

Andrew Schorr:

Okay.  Well, I'm glad you've got the energy, and I'm glad you've got the good help and that the cancer's controlled.  Diane and Terry Barter, thank you so much for joining us from Berlin, Massachusetts, and we wish you all the best. 

Diane Barter:

Thank you. 

Terry Barter:

Thank you for having us. 

Andrew Schorr:

Okay.  I'm Andrew Schorr, and this is what we do on Patient Power.  Invite you to be part of our multiple myeloma community.  And as I like to say, remember, knowledge can be the best medicine of all. 

Terry Barter:

Thank you. 

Diane Barter:

Bye bye.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on July 24, 2017